Respite Care in Illinois: A 2026 Guide for Family Caregivers

Illinois family caregivers can find respite care through the Community Care Program's adult day service and the state's 13 Area Agencies on Aging. Knowing where to ask is most of the work.1,2

Caregiving without a break does not make you a better caregiver. It makes you a depleted one. Federal health data show caregivers fare worse than non-caregivers across most health indicators: nearly 1 in 5 caregivers reports fair or poor health, and depression runs roughly twice as high among caregivers as in the general population. Respite is not abandonment. It is the thing that makes sustained care possible.3

What Respite Care Actually Does

Most family caregivers in Illinois wait until they are in crisis before they ask for respite. By then the physical and emotional cost is already high. Planned respite, even a few hours a week of in-home care, an adult day program two days a week, or a one-week facility stay while you recover from surgery, is the infrastructure that makes long-term caregiving sustainable.

If you need help right now, call the Illinois Department on Aging's Senior HelpLine at 1-800-252-8966 or dial 211. The rest of this guide is for families who want to plan ahead.1

Respite Care and Support Options in Illinois

1. Community Care Program (CCP)

What it is: The Illinois Community Care Program, run by the Illinois Department on Aging (IDoA), helps older adults who might otherwise need nursing home care remain in their homes. Its services are comprehensive care coordination, adult day services, in-home services, emergency home response services, and automated medication dispenser service. Respite is not a separate CCP service line: IDoA attributes it to adult day service, which "provides respite for family caregivers, especially those who are employed outside the home."1

Can a family member be paid to provide the care? CCP In-Home Service providers may choose to hire any family member, including a spouse, who meets qualifications, passes a background check, completes 24 hours of pre-service training, and agrees to be supervised by the provider. Hiring family is at the provider's option, and not all In-Home Service providers employ family members as home care aides. Your Care Coordination Unit (CCU) will discuss options with you, and you are free to change your mind at any time. Under Illinois CCP rules, a spouse, power of attorney, or representative payee hired this way is a "Legally Responsible Individual" hired to deliver "extraordinary care," as the CCU documents it (see the FAQ below).1,8

Eligibility: IDoA's list is: age 60 or older; an Illinois resident; a U.S. citizen or an eligible non-citizen within specific categories; non-exempt assets of $17,500 or less (the home, car, and personal furnishings are exempt); an assessed need for long-term care, meaning at risk for nursing facility placement as measured by the Determination of Need (DON) assessment; and applying for and, if eligible, enrolling in Medicaid. IDoA's program page does not give a DON threshold, but the CCP rule does: under 89 Ill. Adm. Code 240.727, a person needs a minimum DON score of 29 points, 15 of which must be scored on Total Impairment, which includes Part A and the MMSE. These figures can change, so confirm the current asset limit and DON threshold with your CCU before you count your family in or out.9

How to access: CCP services are coordinated on a community level by local organizations called Care Coordination Units (CCUs), so the CCU is your contact for CCP questions. For general questions, the Department on Aging's Senior HelpLine is 1-800-252-8966.1

Best for: Families already in the CCP or applying for it.

2. NFCSP Respite Through Illinois's 13 Area Agencies on Aging

What it is: The National Family Caregiver Support Program (NFCSP), funded by Title III-E of the Older Americans Act, makes grants to states, and its services are provided by an area agency on aging or an entity that agency contracts with. Federal law requires those services to include information about available services, help gaining access to them, individual counseling, support groups and caregiver training, respite care, and supplemental services on a limited basis.2

The Illinois Department on Aging has divided Illinois into 13 Planning and Service Areas, each served by an Area Agency on Aging: 12 not-for-profit corporations and one unit of local government, the City of Chicago. Area Agencies are not, as a rule, direct service providers; they contract with local agencies that serve older people in the same community. The Department's Caregiver Support Program page lists the Senior HelpLine.1

Who qualifies: Adult family members or other informal caregivers of someone age 60 or older; adult family members or other informal caregivers of someone of any age with Alzheimer's disease or a related disorder; relatives age 55 and older (not parents) raising a child under 18; and relatives age 55 and older, including parents, caring for an adult age 18 to 59 with a disability. For a family caregiver, respite requires that the person cared for be an older individual who is frail: unable to perform at least two activities of daily living without substantial help, or needing substantial supervision because a cognitive or other mental impairment makes their behavior a serious health or safety hazard. An older relative caregiver must also live with, and be the primary caregiver for, the child or adult with a disability.2

What it covers: Respite under the program means temporary relief from caregiving responsibilities, at home or in an adult day care or institutional setting. Ask your AAA what respite it offers in your area.2

How to access: Call the Illinois Senior HelpLine at 1-800-252-8966 and ask about caregiver support from your Area Agency on Aging. You can also call or text the federal Eldercare Locator at 1-800-677-1116, which connects families and caregivers to services in their community, including their local Area Agency on Aging.1,10

Best for: Family caregivers of a frail older adult, including one living with Alzheimer's disease or a related disorder, who want to start with the local aging network.

3. Illinois Home Services Program (HSP) for Adults Under 60

What it is: The Illinois Home Services Program, run by the Division of Rehabilitation Services (DRS) within the Illinois Department of Human Services (IDHS), helps people with severe disabilities who need help with daily living activities remain in their own homes. Customers select, employ, and supervise their own Personal Assistants, who help with household tasks, personal care and, with a doctor's approval, certain health care procedures, under a service plan the customer develops with a DRS rehabilitation counselor. HSP is funded through Illinois Medicaid home and community-based services authority.4

Eligibility: HSP serves people with severe disabilities who are under age 60. If your loved one is 60 or older, look at the Community Care Program above.4

How to access: HSP is administered through local DRS offices, and the service plan is developed with a DRS rehabilitation counselor.4

Best for: Families caring for someone under 60 with a severe disability who needs in-home help, since the CCP starts at age 60.

4. Adult Day Services

What they are: Adult day programs provide structured daytime programming in a community setting, typically 4 to 8 hours per day. Programs include meals, activities, social engagement, and varying levels of nursing care. For caregivers of people with dementia, an adult day program can be especially valuable: it gives the care recipient structure and social contact during the day while returning consistent weekday hours to the caregiver.

Finding programs: Adult day services are one of the Community Care Program's services, and IDoA says adult day service "provides respite for family caregivers." If your loved one is in the CCP, ask the Care Coordination Unit; otherwise call the Senior HelpLine at 1-800-252-8966.1

Who pays:

• NFCSP respite can be provided in an adult day care setting; ask your AAA what it funds.2
• CCP includes adult day services for eligible participants; confirm with your CCU.1
• Long-term care insurance often covers adult day under the HCBS rider.
• Private pay is the default. Nationally, adult day services run a median of about $95 per day, or roughly $24,700 a year at five days a week; Illinois rates vary by program and region, so contact individual centers for current pricing.11

Best for: Caregivers who need consistent weekday respite and care recipients who benefit from socialization and structured activity.

5. VA Respite for Veterans

What it is: Under VA's caregiver regulation, the benefits VA provides to General Caregivers include respite care for eligible and covered veterans, and no application or clinical evaluation is required to obtain benefits as a General Caregiver. VA describes respite as a period of rest or a break from caregiving.6

PCAFC: Eligible Primary Family Caregivers in the Program of Comprehensive Assistance for Family Caregivers may receive at least 30 days of respite care per year, and more if clinically appropriate and requested by the Primary Family Caregiver.6

How to access: Call the VA Caregiver Support Line at 1-855-260-3274 (staffed Monday through Friday, 8:00 a.m. to 8:00 p.m. Eastern; it is not a crisis line, so if you or the veteran are in crisis, call 988 and press 1 or text 838255, any hour of any day). The line can connect you directly to your local VA Caregiver Support Program team; ask that team about respite for the veteran you care for.5

Best for: Families caring for a veteran, especially Primary Family Caregivers in PCAFC.

6. Short-Term Facility Respite and Emergency Respite

Short-term facility respite places the care recipient in an assisted living community or nursing facility for a few days to several weeks. Many Illinois assisted living facilities offer short-stay arrangements; call facilities in your area for current pricing and availability.

Emergency respite: if a sudden crisis leaves your loved one without care, call the Illinois Senior HelpLine at 1-800-252-8966 or 211 as a first step, and ask your Area Agency on Aging whether NFCSP respite can help.1

Who pays: NFCSP respite can be provided in an institutional setting, so ask your AAA first. If your loved one has elected hospice and Medicaid covers it, Inpatient Respite Care is paid at the respite rate for up to five days each respite admission; the sixth and later days are paid at the routine home care rate. Otherwise, ask each facility for its private-pay rate.2,7

What Will Respite Care Cost in Illinois?

The question behind the question is almost always money, and the honest answer is that what you pay depends entirely on which door you walk through. For the funded programs, the answer comes from the program itself, not a price list.

• NFCSP respite: ask your AAA. Program services are provided by an area agency on aging or an entity it contracts with, so what your family can get, and on what terms, is a question for your Area Agency on Aging.2
• CCP: ask your Care Coordination Unit. CCP eligibility includes applying for and, if eligible, enrolling in Medicaid, and the CCU coordinates services locally, so put any cost question to the CCU.9
• Private-pay adult day is the benchmark to anchor on. If you pay out of pocket for adult day services, the national median is about $95 per day, or roughly $24,700 a year at five days a week. That figure is a national benchmark; actual Illinois rates vary by program and region.11

Before you decide respite is out of reach, call your AAA and, if your loved one is in or applying for the CCP, your Care Coordination Unit, and ask what they can offer.

How to Start Respite Care in Illinois

Key Illinois Respite Contacts

Learn More

Find personalized help navigating respite care options in Illinois at brevy.com.

The information on Brevy.com is for educational purposes only and is not a substitute for professional legal, financial, or medical advice. Rules vary by state and program and change frequently. Always verify with the relevant agency or a qualified professional. Brevy is not a law firm, financial advisor, or healthcare provider.